title: Health-related quality of life and congenital heart disease in Australia.
abstract: OBJECTIVE
  To determine whether, in children with congenital heart disease (CHD), disease severity is associated with health-related quality of life (HRQOL) and impact on the family.
  
  
  METHODS
  Cross-sectional, single-centre study comparing HRQOL outcomes of age and sex matched children with hypoplasia of the left ventricle (HLV) (n = 31) and tetralogy of Fallot (n = 29) was performed in Queensland, Australia. HRQOL was assessed using generic and disease-specific components of the Paediatric Quality of Life Inventory Measurement Model (PedsQL). Intra-diagnostic age group comparisons of HRQOL were examined. Impact of CHD on families and parental HRQOL was assessed using the PedsQL Family Impact Scale.
  
  
  RESULTS
  Child and parent-proxy reporting indicate children with HLV have significantly lower overall HRQOL than children with tetralogy of Fallot across generic domains of HRQOL (P < 0.0001), with significantly lower scores in physical (P < 0.0001) and psychosocial (P < 0.0001) health domains. No significant difference in child reporting across domains of the Cardiac Module is evident. Parent-proxy reporting indicates significantly lower scores on the symptom scales for children with HLV (P < 0.001), with greater cognitive problems (P < 0.02) and perceived treatment anxiety (P < 0.01). No significant differences in HRQOL were identified between age groups. HLV has a greater overall family impact, with significantly lower parental HRQOL (P = 0.0001) and family functioning (P < 0.0001) summary scores.
  
  
  CONCLUSIONS
  The more severe condition of HLV is associated with poorer HRQOL in some domains and has greater impact on parental HRQOL and family functioning.
authors.affiliation: Queensland Paediatric Cardiac Service, Mater Health Services, Brisbane, Queensland, Australia; School of Population Health, University of Queensland, Brisbane, Queensland, Australia.
authors.forename: Karen J
authors.initials: KJ
authors.lastname: Eagleson
authors.forename: Robert N
authors.initials: RN
authors.lastname: Justo
authors.forename: Robert S
authors.initials: RS
authors.lastname: Ware
authors.forename: Susan G
authors.initials: SG
authors.lastname: Johnson
authors.forename: Frances M
authors.initials: FM
authors.lastname: Boyle
mesh_terms: D000293:Adolescent; D001315:Australia; D002648:Child; D002675:Child, Preschool; D005190:Family; D005260:Female; D006304:Health Status; D006330:Heart Defects, Congenital / Q000150:complications / Q000208:ethnology / Q000601:surgery; D006801:Humans; D008297:Male; D011183:Postoperative Complications; D011788:Quality of Life
keywords: congenital heart disease; paediatrics; quality of life